Perinatal hospice is comprehensive care and support given to pregnant women and families when their preborn child is diagnosed with a condition that will likely be fatal prior to birth or shortly after. Perinatal hospice is a compassionate and life-affirming alternative to abortion that considers the well-being of both mother and child.
Defining the Terms
*These definitions are sourced from the Indiana Department of Health.*
Perinatal hospice is formally defined as “the provision of comprehensive, supportive care to a pregnant woman and her family beginning with the diagnosis of a lethal fetal anomaly and continuing through the live birth and death of the woman’s child as a result of the lethal fetal anomaly”. According to Indiana law (Indiana Code 16-25-4.5-3), perinatal hospice includes “counseling and medical care provided by maternal-fetal medical specialists, obstetricians, neonatologists, anesthesia specialists, speciality nurses, clergy, social workers and others” to ensure that the woman and her family experience the “life and death of the child in a comfortable and supportive environment.”
The word, perinatal, refers to the time “before, during, and immediately after the birth of a child.”
Hospice is a “specialized form of interdisciplinary health care” to bring comfort to an individual experiencing the last phase of a terminal illness or disease.
A lethal fetal anomaly is defined as a “fatal condition diagnosed before birth that, if the pregnancy results in a live birth, will with reasonable certainty result in the death of the child not more than three months after the child’s birth.”
There are a number of life-limiting conditions that can lead parents to choose perinatal hospice.
Components of Perinatal Hospice
What services does perinatal hospice include?
- Prenatal support – emotional, spiritual, and medical
- Support groups for parents, siblings, and others
- Guidance in working with medical specialists
- Childbirth education and preparation
- Individualized birth plan
- Assistance in creating mementos, keepsakes, and memories
- Assistance in planning memorial services and funerals
- Grief support
- Pain management for the baby (if necessary)
For an example of what one of these programs looks like, read through the description of Footprints Perinatal Palliative Care Program at St. Elizabeth Healthcare located in Lawrenceburg, IN.
Read through the Indiana State Department of Health’s official brochure about Perinatal Hospice to learn more about the programs offered in our state.
Finding a Program
Currently, the U.S. has over 350 hospitals, hospices, and community-based organizations that provide perinatal hospice and palliative care to families who wish to continue their pregnancy after receiving a fatal diagnosis for their preborn child.
Click here for a list of formal programs in the United States.
For those who don’t have access to a formal hospice program, or who choose not to use one, check out this list of resources for parents from perinatalhospice.org.
Stories
Read this story about Brooke Martin, a former EMMY-winning news anchor for WISH-TV News 8, who chose life for her daughter prenatally diagnosed with anencephaly. Brooke Martin is a friend of Right to Life of North Central Indiana, speaking at various Right to Life events including our 2022 Fall Legacy of Life Banquet.
This Focus on the Family video shares the story of Peter and Suzanne Guy, parents who chose life for their now healthy, adult daughter, Rachel, even after an adverse prenatal diagnosis and their doctor’s recommendation of abortion.
This article details the story of Josh and Laura Huene, parents who received a fatal diagnosis for their unborn daughter, Pearl, in 2006, yet chose to continue the pregnancy “for as long as my body would allow.” Josh and Laura spent a few precious moments with their daughter before “lovingly releasing her into the arms of Jesus.”
Further Reading
For a comprehensive list of FAQs about perinatal hospice care, click here.
Books:
Waiting with Gabriel: A Story of Cherishing a Baby’s Brief Life
A Gift of Time: Continuing Your Pregnancy When Your Baby’s Life Is Expected to Be Brief
E-Book for Mothers| Journey In Love: A Catholic Mother’s Prayers After Prenatal Diagnosis
Organizations:
Be Not Afraid
Perinatal Hospice
Fetal Hope Foundation
All That Love Can Do
Articles:
Hospice, Not Abortion for Dying Infants
No Doctor Should Ever Tell Parents Abortion ‘Is An Act of Love’
Students for Life LEARN|Fetal Abnormality
Perinatal Hospice Helps Families Bond, Grieve, Heal, after Life-Limiting Prenatal Diagnosis
A Pro-Life Introduction to Perinatal Hospice
Videos:
Read more pro-life articles